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Do Extraintestinal symptoms go away upon UC remission or colectomy

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Posted 12/27/2011 12:32 AM (GMT 0)
Hello folks!

I've been a lurker on this forum for about 6 months. It wasn't until I got my first severe extraintestinal symptom last month that my complacency with my disease turned into motivation to cure it. I have read a lot of stories on this forum ranging from mild to severe. I definitely do not have it as bad as some do and my heart goes out to everyone here who has to put up with UC/Crohn's.

Although it had taken me a while to get into a good routine, I was fine with taking my meds and watching my diet for the rest of my life (avoiding nightshades, uncooked veggies, caffeine, fake sugars, eggs, and anything with lactose in it.) I no longer find this way of life acceptable as my first extraintenstinal symptom is looking more like a case of Ankylosing spondylitis or Arthritis of the spin and all other joints (Thankfully it hasn't reached my fingers yet) It hasn't been officially diagnosed yet because its so hard to test for. Alas, my doctors believe that I may just have Ankylosing Spondylitis. Apparently these things take time to diagnose.

I am finding it very difficult to treat the arthritis and my UC because Naproxen and IBUPROFEN causes bleeding in my colon. I have had to turn to expensive supplements and other alternatives that help somewhat but do not give me anywhere near the pain relief of IBUPROFEN.

Bottom line: I'm tired (literally exhausted every day) and I have a feeling that the root of all of this is my UC. Treat/cure the UC and fix the other issues in the process.

I have read a few places on the web that these Extraintestinal symptoms and allergies that arrived after the onset of UC tend to go away upon remission of UC or after a colectomy. I am curious if anyone can verify this?

Thanks in advance!
Posted 12/27/2011 1:03 AM (GMT 0)
I have heard some say that these symptoms can disappear with surgery. I personally deal with fatigue and I've seen many mention that their fatigue greatly improved after surgery but I don't think it would be the case for me being I had the fatigue long before I had any UC symptoms. You have to remember surgery comes with its own potential side effects. Most people do very well after surgery but not all of them. It is a long, involved procedure and a highly skilled surgeon is required. I think the best thing to do in your shoes is to speak with some surgeons and some post-surgery folks and see how you feel about it as an option. There are dfinitely some huge benefits to being colon-free but also some downsides. Usually with a j-pouch, people go 6+ times a day.
Posted 12/27/2011 2:25 AM (GMT 0)
I had a total colectomy 11/17 and, yes, my extraintestinal symptoms are gone.  I had arthritic pain all over my body, mostly in my hands and elbows, and that has been gone since the surgery.  It was amazing - I realized after the pain meds wore off that I didn't have arthritic pain for the first time in years.  I'm still sometimes surprised when something that would have hurt while I still had UC doesn't cause any discomfort.  The people on the ostomy board might be able to help you more irt other extraintestinal symptoms, so please don't just take my word for it!

Erin

Posted 12/27/2011 3:44 AM (GMT 0)
During my last flare one of my symptoms was crippling arthritis to the extent that I could not make a fist and could just barely climb stairs. But all of my symptoms disappeared when my flare ended. I never took prescription meds except for the antibiotics which knocked out my flare and prescription VSL#3DS probiotics as part of my maintenance.

I still have some lower back pain but I don't think it is UC related. I have degenerative discs from years of weight lifting and hitting thousands of golf balls. I can manage the discomfort without painkillers.

I think avoiding nightshades is a really good idea, it has really helped me. You may also want to try avoiding gluten for a couple of weeks to see if things improve. Once you are out of your flare you might try some glutamine to promote healing of digestive tissue.
Posted 12/27/2011 8:22 AM (GMT 0)
hi michael.

i have uc and as both.

and i control them with diet.

i was first diagnosed with AS, since the UC was mild noone bothered with it.
for about 2 years i've stuffed myself with NSAID's (including ibuprofen) and the only result was that i was feeling worse day by day (colon and joint pain included)...

after the UC diagnose i've started a no starch diet that helps me a lot and now i am in remission with both my diseases.

regarding to your question:

first thing i've noticed after my first colonoscopy was that in that day the joint pain was almost zero. normaly i would have slepped about 4 hours/night due to my back pains...but that night, before the colonoscopy, with my gut clear...almost no pain.
the seccond thay - the same happend.

this was the thing that triggered my research over the internet - because there was a clear correlation between the status of my gut and the pain in my back/knees/shoulders - and this is how i've started my no starch diet.

now i know that if i eat offending foods - even in remission, my joints will start to hurt, even if my gut will not react so badly. probably a sub-inflammatory state of the gut still resides there, even if the UC sympthoms are not present anymore.

Good luck.

P.S:
i know a guy with coleoctomy who developed AS after the procedure. he has a j-pouch...
so if you plan to cut your colon just for AS...do not bother. you can get AS even then
he too controls his problems with diet.
Posted 12/27/2011 9:00 AM (GMT 0)
Thank you everyone for your responses. Keep them coming please. The more info I have the more informed my decision can be.

Alinus: Your post was very insightful. I'm not planning on cutting my gut out. I'd like to hold on to it for now. Your "no starch diet" sounds interesting. Do you have any recommendations or links on how to get started? I'll try almost anything if it makes me well again.

I just ate a Danish Butter cookie and my joints are hurting again. My gut is perfectly fine with it. Crazy how fast that happened. Guess I'll be laying off those for now on.
Posted 12/27/2011 11:07 AM (GMT 0)
www.kickas.org/forums

register and try nsd forum.

i am active there also, and it's a special diet forum, with no external interventions.
Posted 12/27/2011 3:45 PM (GMT 0)
I doubt your AKS would improve with a colectomy. I know a jpoucher who treats her AKS with Humira and has great results.

Sue
Posted 12/31/2011 2:22 AM (GMT 0)
Thank you everyone for the info so far.

Alinus: I registered and I posted on the forum. I started the NSD right away too. I posted on the support group forum and a few of the folks are waiting for you to post. I'd love to have a conversation with you as I'm still learning the ropes and trying to get this under control asap.
Posted 12/31/2011 2:14 PM (GMT 0)
LaughingBowels,

I just ate a Danish Butter cookie and my joints are hurting again. My gut is perfectly fine with it.

That's a sign of gluten intolerance. Some people have gluten intolerance which affects their joints and not their gut, it's all a part of the Leaky Gut Syndrome. Have you tried to get off gluten, dairy, wheat?

But I also wanted to mention to you that LDN - low dose naltrexone - has put people with UC in remission (many on this forum), and it also has a track record of putting people with AKS in remission as well. You could look into it and see if it's right for you, no?

http://www.ldninfo.org/

if you scroll down to diseases treated: Other Autoimmune Diseases:

  • Ankylosing Spondylitis
Posted 12/31/2011 3:00 PM (GMT 0)

InSoFla said...
LaughingBowels,


I just ate a Danish Butter cookie and my joints are hurting again. My gut is perfectly fine with it.



That's a sign of gluten intolerance. Some people have gluten intolerance which affects their joints and not their gut, it's all a part of the Leaky Gut Syndrome. Have you tried to get off gluten, dairy, wheat?

I am off of all dairy, and wheat. This is with the exception of the occasional pizza slice which doesn't seam to cause me issues so long as I don't make a habit of it.

I just started on the NSD 4 days ago and it excludes gluten. Things have gotten worse but I think I can safely attribute this to not taking my supplements which have always helped with the pain.(they either contain soy or starch)




InSoFla said...
But I also wanted to mention to you that LDN - low dose naltrexone - has put people with UC in remission (many on this forum), and it also has a track record of putting people with AKS in remission as well. You could look into it and see if it's right for you, no?

http://www.ldninfo.org/

if you scroll down to diseases treated: <span class="Special">Other Autoimmune Diseases:
<ul>
<li>Ankylosing Spondylitis
</li></ul>


It looks interesting. I have to admit that after doing some research I am puzzled over how it works. Just looking at your sig I noticed it helped you out. Any side effects.. even the little ones? Do you still have to take it?

According to several websites LDN cant be prescribed. How is that worked around?
Posted 12/31/2011 3:14 PM (GMT 0)
LaughingBowels,

I am off of all dairy, and wheat. This is with the exception of the occasional pizza slice

Gluten free is different from wheat free. But IMO you have a definite issue with gluten intolerance, from your joint symptoms as well.

With regard to LDN, yes it can be prescribed - usually by a holistically oriented doctor, although some actual gastros (from forum patients here) have actually agreed to prescribe LDN. Once prescribed, it must be compounded by a  compounding pharmacist.

Here's my story on LDN and its resources:

Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

Here's my story on LDN: I started on 4.5mg of oral LDN on 2/7/2011, and saw no change - still continuing to bleed at a 10.

When I spoke with the compounding pharmacist, she mentioned that I may not be absorping the LDN properly, and suggested I switch to a transdermal LDN formula, which would be a cream applied to the bottom of the forearm. She told me a lot of her pediatric patients do much better with the Transdermal LDN, and in some patients with absorption issues it helps too. Bottom line is it works!

LDN - low dose naltrexone is very cheap - it costs around $25-30 a month (for pills or the transdermal cream). Gastro doctors usually don't prescribe it because they say "it isn't the standard of care". My gastro refused to prescribe it, so I found a local osteopath who did. I did ALOT of research, and the bottom line is: it works!

Once you get the script for it, you'll need to get it from a compounding pharmacy, who'll make it up for you, and ship it to you. The best compounding pharmacy in the country for LDN is Skip's Pharmacy in Boca Raton, FL.

They ship all over the world - they have 20,000 patients with various conditions on LDN. That's where I get my transdermal LDN. If you contact them, they'll tell you who locally to you will prescribe it to you.

You can reach them at: 800-553-7429

www.skipspharmacy.com

Please, go to www.youtube.com write: Low dose Naltrexone in the search field and you will find a pharmacist explaining where in the U.S you can buy your medicine. You can also read these pages to find more info to bring to your doctor:
www.ldninfo.org

www.lowdosenaltrexone.org
www.ldnscience.org
www.ldnresearchtrust.org


and if you want to find what other patients have experienced when used LDN, choose UC, Or breast cancer, or Crohns Disease, or in your case AKS at:
www.ldndatabase.com

Initial side effects, some vivid dreaming (which I love BTW). Yes, I am still takng LDN and frankly don't intend to stop, especially since it's an immune system booster and it's been hypothesized to prevent cancer.

Hope this helps. Good luck to you.

Please let me know how it works out for you.



 


Posted 1/1/2012 9:59 PM (GMT 0)
i take my pills or suplements even if they contain starch or sugars because they help more than not taking them.

i do not think that a small amount of starch/sugar will make a difference - most of it will be digested before it reaches the gut. there's people who like to do this in a verry extreme way but i do not agree.
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